Grief and Autism

Defining grief and discussing feelings of loss and sadness surrounding Autism

This is dangerous ground. Issues surrounding Autism are sometimes very political and raise great emotional reactions. Ideas about grief are among the most controversial, discussed, ranted over, rage-raising and distressing issues on many autistic forums and blogs today. I am about to try to sort some of the controversy, anger, shaming, blaming, and distress. Instead I might inadvertently add to it, who knows?

I spent hours reading definitions of grief preparatory to writing this.
Grief can be explained as a normal or natural reaction to loss, deep sorrow in reaction to change of any sort, the usual being over loss of a relationship due to death. There are also aspects of grief in loss of expected outcomes or change of expectations or plans .

Grief is not simply feelings of loss, but also a ground for conflicting feelings of guilt, anger,sadness, relief, or release. We can feel sorrow over the loss of a parent and still feel relief over their release from suffering, from the difficult behavior or painful relationship, and feel guilt for feeling the accompanying sense of freedom. All of that is part of grief, and there is often much more.

In natural cycles of grief there can be stages of denial, anger, bargaining, depression and sadness, and acceptance. These can happen in stages, and can be repeated over and over in any order, sometimes simultaneously, other times remaining in one stage for long periods of time.

Many people may need support and counseling or therapy to help with grief. It is not uncommon for adaptation to be incomplete or adjustments to be unhealthy in our search for consolation , solace, and peace over our place in the midst of our losses.

The thing that brought grief to my attention was the third reading of Tony Attwood’s excellent book on autism. “The Complete Guide to Asperger’s Syndrome.”

I read it through the first time when I suspected my autism but was not sure. I thought much of it was written only about children and did not see how much of it applied to me. Then I read it again and recognized so many traits and experiences of my own from my childhood (looking at it and comparing it to my younger self). The entire book read from the aspects of my own childhood was filled with “aha” moments.
I was amazed and so interested… it explained almost everything about my early life. This was it!

The third time I read the book, something very strange happened. As I read those descriptions of childhood struggles I had the urge to cry uncontrollably. I felt sadness and loss and immeasurable helplessness and confusion. I was re-living my childhood emotions. I felt the feelings I had felt in all of those impossible situations from my childhood, the guilt, the anger, the sorrow, overwhelming sorrow and sadness all wrapped together in one experience, each situation the author described bringing forth a flow of memories of similar situations from my childhood, adolescence, and teen years.
The most predominant of these was the deep sorrow I had for myself and my struggles.
I experienced this feeling for most of my life. Feeling nobody understood, nobody cared, I was lost and helpless, feeling I was the cause of everybody else’s troubles. I remember being told over and over to stop feeling sorry for myself. I remember wailing ” I don’t know how” .

I can remember so many tears and so much distress. I remember begging for therapy, a counselor, for somebody to help, and being told repeatedly that “there is nothing wrong with you”.
I just needed to shape up, to get with the program, to shake it off, pull myself together and TRY..to do right, to be good, and to stop being selfish and bad. I never understood how I was supposed to do these things, but I was to do them by myself by willpower and strength of character. The feeling of futility was immense.

OK, back to grief. I believe I was trapped in grief and despair. I knew I needed help and comfort and that I was not ever ever going to get. I had a need for understanding and compassion for the struggles nobody seemed to understand, and took for deliberate willfulness and acts of evil. I needed explanations, insights, support and directions, I needed details of almost everything explained in depth . I knew I was not going to get them in my home situation.
I came to the stage of acceptance eventually, but the underlying sadness was there throughout most of my childhood and young adulthood. I spent my early day to day life not only in fear and dread of any interaction or mistake I might make, but also in grieving for the things I was pretty sure others had somehow obtained but that were forever out of reach for me.

Grief for loss of loved ones is called bereavement. It is a reaction to losing through death, divorce, separation, life changing disability or other circumstances. I have always processed this sort of grief more easily because the “why” factor is usually evident. The loved one died, had health changes, was no longer in love , moved far away, all concrete facts that don’t have that “why” factor.

Now we come to an opinion that is not popular with many autism groups. There is a huge backlash against parents of autistic offspring who lament online that their children are suffering and wish that they were not autistic.
I find the anger of some autistic people may be misplaced because the distress the parents are showing is at their own helplessness to help their struggling children, some of whom are very heavily afflicted with many of the worst features of autism.
I think it is natural grief that is showing, however poorly worded in forums or blogs. The parents are truly grieving because they see all sorts of things that they have been helpless to prevent and to aid.
There is a loss of expectations for a normal childhood and adulthood, a loss of dreams for a bright future, a loss of the idea of “what it was supposed to be”.
I understand the angry autistics’ reaction to the spoken wishes of so many parents saying they wish the child had not been born, that they wish the child was not autistic, etc.
In many cases such children are killed by their parents. In many cases children are abused by their parents.
In times of the past and today, many wish for elimination of pregnancy of a potentially
” damaged ” child , society of today deeming it is OK to select which pregnancy can be terminated , the demand is there for tests for autism as there is for down’s syndrome and other genetic conditions. To be an autistic child and hear that you are unwanted is probably a very common state. I heard it too. I understand the reaction against such statements. I understand the reaction against being told we are unwanted.
I understand the pain it causes in our own autistic hearts and I suggest that the anger we feel is grieving of our own over things that we have missed, have lost, have never known. I have no answers. Grief is part of the human condition and will be experienced by the vast majority of humans today. Grief has been the hardest to sort and understand of all the almost constant emotions of my life. Now with my new understanding of my own autism I am making progress toward sorting it out.
I have no answers but find it difficult to focus all of my rage on the parents in these support groups who are feeling loss of ability to help their children, who feel grief at the things they want their children to be able to experience or goals they will perhaps never attain. I don’t think it is realistic to blame the behavior of a few parents on all parents of autistic children, any more than we all recognize how unfair it is to blame ourselves for our autistic struggles, or the behavior of a few autistic people .
I may write more about grief and autism as I continue to sort and to understand. Mean time, I want to make a call for unity. Autism needs different perspectives of diverse people to continue to help us all understand the many ways we are affected, our needs, our self understanding, our struggles and our triumphs. I hope we can refrain from tearing other grieving people apart in our quest for “justice”, “fairness”, etc.
As human beings we are all in this together. Let kindness and not anger and retribution win this one.


Who am I ???

Finding your authentic self after diagnosis


There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.



I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).


I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

What happened to all the autistic children?

They grew up to be adults!


Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.


Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.


Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!